It's been some time, but I don't have very much to say. I get daily radiation untill Tuesday. This time I don't have much to complain. Swallowing is still a bit difficult sometimes, but not like the first time in August. After the radiation they will do some tests on my lungs and my heart and another PET/CT scan. I wonder if these tests could still prevent them from doing the transplant... That transplant (I found out that "transplantation" is not correct) will probably start in the beginning of december. That's good news, because I wanted to do an audition for a cello chair in the orchestra of De Munt, in Brussels (probably the best orchestra in Belgium! some people might shoot me now...) on the 26th of November. The chance that I will get the chair is quite small of course, but if I do, I hope they can wait for me to be fit again!
To make things clear. I said the radiation would probably start yesterday, but it will only start next Tuesday. Thanks though, for supporting messages :)
And one more thing to people with common names... Sometimes I can't be sure who is reacting on my blog if I only have a first name like Jan or Tom or Ann or... I hope I'm not hurting you, I don't know what it's like to have such names :) But of course I'm very thankful for every message I get!
Instead of Thursday, my doctor let come today for a meeting. I had sent him an e-mail with my feelings about last week. He could tell me a lot more. At the place where the radiation was concentrated, the scan showed nothing. But lower, inside my chest, they still see a little tumor. They will try to remove this with even more radiation! This will take two weeks, probably starting on monday. But research shows that the radiation is not enough for my kind of refractive cancer. I would only be safe for a few months and when it would come back, they don't have any therapy left... So, after the radiation they start as soon as possible the transplantation. And here is the good news, They found a donor!!!! And a good one, matching 10 out of 10. So we're really getting to the point now. The bad thing is, it's a very very heavy treatment, the doctor said. I will be in the hospital for 4 to 5 weeks (in quarantaine) and the recovery takes 6 to 12 months... But he made clear that this is the only choice I have right now.
Today I had to go to the hospital to talk about the PET-CT of monday. They kept me waiting very long and when a doctor came, it was someone I'd never met before, and he hadn't seen my file before. He could only tell me that there was nothing to be seen at the place where the big lump was before, but there was a place where the scan showed something, but he thought it was not a lymphnode. He didn't have any answers to questions about "what now?" and about the stem cell transplantation. All this had to be discussed on a general meeting with the other professors. He was very impatient and gave me the feeling that I was a stupid child with a cold or something.
I really don't understand this. One moment they give you the impression that your case is very exceptional and urgent, and now it feels like they don't give a damn. And if they've got nothing to say, why do they let me come?
Next week on Thursday I have a new appointment. The one I should have had today, I guess.
I promised to keep you informed so here I am again. Without any news actually :) My blood was allright on Tuesday, but they didn't have a donor yet. The taking of my stem cells will happen only after the scan, so after the 5th of october. In the mean time I feel fine once more! :)
I'm sorry for the long silence but also for me it's a quiet period. I'm just waiting... The last time I visited the hospital, everything was allright, but they only checked my blood and general health, which is fine! The next scan will be the 5th of october and untill now, I don't have any news about a donor. I have no idea how long this is supposed to take, but it seems quite long! Meanwhile, the lump is small (not gone) and stays small. The radiotherapist told me it's possible that I will always feel a bit of rest of the tumor. Next Tuesday I have an appointment at the hospital again. I hope they can tell me something about a donor and about the taking of my own stem cells. I will keep you informed!
Yesterday I had a phone call with my doctor. They haven't found a donor yet, but we have some more time, he said. The effects of radiotherapy can last for two months, so in normal circumstances they don't start another therapy during this period. Which means, indeed, I will be waiting for another two months. Unless something would happen before.
More waiting... But in the mean time, I feel fine!
Sorry for the long silence but there was not so much to tell. Friday I had my last radiation. The lump is not gone yet but they say it probably will be in a few weeks. At least it's a lot smaller. Except for the pain in my throat and some irritation of the skin, I'm very relieved about this therapy. Compared to the last chemo I had, this is peanuts! :) So, now we have to wait for the lump to dissapear and for a donor to come around... I suppose they will also try to take my own stem cells again very soon.
Last weekend, me and my girlfriend went to the Belgian coast. Ok, it's not the same as two weeks in southern France, but we had a really good time! It was the only holiday for me this summer! (how pathetic!:))
As long as the lump is shrinking, I am fine. I'm only starting to get a bit nervous because the stem cell transplantation is getting near.
Things are going okay. The first days after the start of the radiation therapy, I had fever every afternoon, and the lump grew even bigger. This made me worry a lot, because I thought the disease was just going on and the radiation had no influence at all. The results of a blood-test last week were a little alarming as well, because CRP was very high (69), but I didn't have any infections (I know, this is only understandable for doctors, but I know some readers are). Anyway, I was getting quite depressed by all that, but then every day the fever started to get lower, and we can even say the lump has shrunk a bit. Now, I feel fine, except for some pain in my throat when I swallow, due to the radiation.
One thing is less positive. The blood of my brothers does not match with mine. They started looking for a donor. The chances of finding one are about 70%. So, I go on hoping!
Thursday I went to the radiotherapy departement. There they did a few tests and also a new scan. They gave me a schedule starting next Thursday, but in the evening the doctor called me to say they wanted to start the next day because they saw on the scan that the lump was growing very fast. So, on Friday I had my first "fraction" (that's what they call it) and today my second. I'll have a fraction five days a week. There's nothing painful about it, but they say my skin will get irritated and I might get difficulties to swallow, because it's near my throat. I get a little nauseous from time to time, but not as much as during the chemo. The lump is not getting smaller yet, but they said there might be some necrosis (dead cells) or oedema (zwelling door vocht), so it's difficult to see any result at this moment. I hope I will see some changement by the end of the week.
On the PET/CT-scan they could see that the lump at my neck is the only place where the cancer is still active (but very active it is!). This means they can do radiation. That means new hope, so it's very good news. And there is more. There's a new kind of medicin that can help your stem cells to come out of the bone marrow, it's not registered yet, but the results untill now seem to be quite positive. So maybe they can still collect my own stem cells. The results of the blood test of my family can take some time to find out.
The thing is, they will not start radiation before next week, and the lump is growing very fast. I hope it's not going to hinder me too much during the next days, because if it keeps growing like this, it will become bigger than ever before. The radiation itself will not be unbearable, not like the chemotherapy at least. Tomorrow they will make some kind of mask, to use during the radiation sessions, to keep my head and shoulders steady.
Some diversion once more. After these tense moments some of you might remember that our Percussion Orchestra participated in the World Music Competition in Kerkrade. Well, we won it! So we are officially World Champion for the next four years!!!
I want to thank everybody for all the positive messages you sent me, it really means a lot to me!! And I want to ask you to keep your fingers crossed from time to time, because of course it's not quite over yet!
I went to the hospital today to collect stem cells, but I didn't have enough... And, they know they won't get enough for now. Maybe they can try to collect again after another chemo, but for now they're not planning to give me any.
The doctors think I have a very refractive Hodgkin-lymphoma, which means it reacts to the chemo, but only temporary, and starts to grow again after a while. This happens to 5 to 10% of the Hodgkin-patients. So, because chemotherapy is not really working against this cancer, they can try to cure it with radiotherapy, followed by a stem cell transplantation, which will now be allogeneic (from a donor). They need to do a new PET-scan next Tuesday and then they can see if radiation is possible. (everybody fingers crossed!!!) My brothers and parents will go to the hospital monday to test their blood, to see if someone is compatible. (again fingers crossed!!!)
So, this is the verdict, at least untill now. There's a lot of "if's" and I really feel I have to get through the eye of a needle. Of course there is still hope, but this story will end in a real thriller. I can really do nothing but hope. The rest seems to be pure coincidence, and it's beyond my powers to have any influence on it.
As I am physically quite okay, I will try to enjoy this period very much, not to think too much about the future and live day by day. I don't have the prospect of another chemo, and that's about the only positive thing I have to say today :s
The end of my disease was in sight. It was becoming quite a long story, but with the prospect of curing, everything seems more bearable. My disease decided to make it even longer and a lot more uncertain...
Yesterday in the hospital was a horrible day. The psychological effect of the hospital is getting very strong, I was very nauseous and had to throw up three times, also because I was still not entirely recovered from the last chemo. I was very happy my mother joined me there. She took me outside for lunch because it seems I can not eat in a hospital any longer.
About the lump they could not tell me anything yet. They don't think it's scar tissue, because it's getting bigger. They will talk about it on a general meeting of the professors on Thursday. It's possible they will have to do another biopsy (would be the third). So friday I will know more. They also decided to collect stem cells on friday. This week I have to get two injections a day and friday they will try to collect the cells with a special machine. It seems they will have to place another catheter for that, with a local anaesthetic.
Monday I had the heavy chemo in the hospital and I could ask about the new lump. Unfortunately there was no professor there, only an assistant, which is not bad of course but a professor should have a lot more experience. The assistant told me not to worry too much, it could be some scar tissue from the biopsy, reacting with something else... But of course I still don't feel quite at ease with that little lump, which has grown a little since last week. So I've sent an e-mail to one of the professors but without seeing it he could not say anything about it, so I'll have to wait untill next monday.
I hope they will find some explanation to put my mind at rest. And if they don't, I hope they will do a new PET/CT as soon as possible.
Untill now, I think I'm suffering a little less than last month, so that's the good news. I hope it won't take as long as last time, then I could be suffering untill monday.
Some of you only know me as a cellist, but I'm also a percussionist! I'm in a percussion orchestra in a really small village near Mechelen, Zemst-Laar. Yesterday we participated in the World Music Contest in Kerkrade, Netherlands. We were the winners of the day, with 90,10%! Now we have to wait for the second percussion day in the contest, the 31st of July. Then we will know who's the champion! I'm very happy I could attend this competition. By coincidence it fitted well in my chemo-schedule. There was another Belgian band who finished just a bit below and there was a nice friendly-competitive atmosphere ('t is stil aan de overkant en van die dingen ).
So that offered me some diversion from the treatment. But there's also one thing bothering me. Since a few days I can feel a little lump (bobbeltje) in my neck, at the place where the big lump used to be. It's only about 1cm, but it's strange because I couldn't feel anything there for some weeks. On the last scan I could see a lump about this size, so maybe it's just this, but I wonder why I couldn't feel it before. I think (hope!) it's very unlikely that the lymphnodes would grow during the treatment. Especially if the treatment is so definitely working... I'l have to ask the doctors but I'm afraid they will only do a new scan after the next chemo (these scans are very expensive and maybe not that healthy as well, unless I want to be radio-active man)
Monday I will go to the hospital for the third and very heavy infusion (if my blood's allright). I'll let you know what they think about it.
The treatment started without any real problems. The doctors are now talking about the stem cell transplantation a lot because that might be coming closer. There are three possibilities: 1. I won't need a transplantation, that means the disease would be really gone after the chemo. 2. They will do an "autologic" transplantation, using my own stem cells, if the disease is not totally destroyed by the chemo. 3. They will do an "allogeneic" transpantation, using stem cells of a donor, maybe one of my brothers. They do this if my own bone marrow doesn't give enough stem cells.
I'm hoping for the first, because a transplantation is not without risks, and then I would recover sooner. The doctors also said they will probably give one more treatment after this one, possibly without the last (very heavy) infusion. I guess that will be finished around the end of August. So that could be a possible end of the treatment. Or, with the transplantation, about one month later, but with a long recovery to follow.
Reading this message again, I'm afraid it's very technical and a bit complicated, sorry for that! Hope I could keep your attention :)
Monday night I had to go to the hospital. I had fever since the evening before and the doctors wanted to be safe, and it appeared they were right... Only yesterday in the afternoon they let me go. It was four days of sweating. The temperature outside was about 29° C. The first days I had a lot of problems to eat, only the thought of hospital food made me nauseous, but then I discovered I'm not the only one with this problem and they have dietists in the hospital to help those people out. We can choose a few other dishes that aren't made in the hospital. Very basic of course, like toast ham cheese or ravioli out of a can... But it helps. Also, my girlfriend brought me some real food, some pistolekes (that's what we call them in Flanders, a kind of little breads) with good cheese and some fruit. Thank you, baby!!
Monday we start the chemo again. I really hope it's the last one, and it might be because the doctor said they will take stem-cells after this treatment.
So, I'll start enjoying my two days before the next chemo. Fortunately, the weather still allows me to!
A moment some of you have been waiting for! I know I have!
The results of the scan were good. There's still two places where they can see activity from the cancer, but it decreased a lot! So that's all very positive. The negative thing is, they need to go on with this heavy treatment, at least one more time, probably two. My parents rent a house in the Provence in France, and I was silently hoping I could visit them for some days, but that seems impossible now. Okay, you can not want everything, but my summer is going to be very boring and sometimes hard.
But we'll try to make the best of it!
Thanks a lot for all the support, I had so many reactions and I feel a lot better today!
Today's monday and I'm still not at all recovered from the chemo of last week. I'm very tired, my muscles hurt after the least effort, and I'm still quite nauseous. The worst thing is, again, the apetite. I've lost about 6 kg in less than a week! (okay, some of you might be jealous about that) The doctor says it's normal. Every chemo is a new attack on the body, every time again, and my body is getting weaker and weaker. And I had fever as well, which is always exhausting. So, no positive news from me, I'm afraid. I can only hope they'll have some good news for me on friday!
Because they couldn't find any infections and my fever wasn't very high, they started the chemo tuesday. Maybe not the best plan because my fever went up to 40 degrees that night, which was quite a horrible experience together with the chemo-illness. Next morning the fever went down and in the afternoon I could go home. Now I still feel very tired and nauseous, but the fever hasn't come back. I hope I'll be better by sunday. Anyway, one positive thing: the scan is next thursday! So friday I will know something more, finally! Greetings!
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